Long time no Post! Sorry. I was so inspired by a friends blog to do my own, and I think that I am failing in comparison. However, I am glad to be able to share with you more news on little Natalie.
She is AWESOME... She is a new kid since we were in Boston. Brad and I joke about the miracle 3 month mark, but we both believe that her procedure in Boston relieved some pressure and created a much happier baby. Since her surgery, she has been a different kiddo. She is so happier and loves to kick and play and still loves to be outside. She no longer cries when she gets her diaper changed, instead I struggle to get her to keep her legs from kicking so I can get a new diaper on. She is so strong, active and noisy:) And she loves to eat her fingers. Sometimes she goes for the whole fist and we just laugh at her. Just in the last week she has discovered that she can grab her toys and put them in her mouth. Everything goes to the mouth including daddy's fingers. She gets a little upset when she can't get her toys in her mouth.
Natalie's follow up visits have gone very well. She just lays there and looks at the monitor like she knows what they are looking at. She was awake, no tears or wiggles and not nursing to get through the echo. Good Job Natalie! Our visit on Tuesday left us very optimistic. Our echo tech said that he thought he saw growth in the left ventricle. I think my heart dropped to my toes and I couldn't stop smiling. Then when we went to see Dr. Fernandez he entered the room with a big smile. His words, " Unless I am hallucinating, that left ventricle looks bigger to me." Amen. He said that her pressures in her heart are dropping and the flow in her new stent is more left to right which are both signs of growth in the left ventricle. Amazing what God can do. He was very happy with her progress and how strong she is and how healthy she looks. She now weighs 12 lbs. 1 oz. What a little chubber. I love it. She is doing so well and we are so happy to hear that her heart is doing well.
So what next??? About 3 weeks ago week talked to the doctors in Boston and they anticipated that we would have to come back to Boston in the beginning of November for Natalie to have open heart surgery again. We were told to plan to be there for up to 3 weeks depending on the procedure they decide to do. So we waited to hear from the scheduling folks to decide on a date. The phone didn't ring and didn't ring, So the patient person that I am, I called Boston. Good News! The doctors in Boston have been reviewing her follow up and have planned another visit, but not open heart. They feel at this time they will be able to just have another heart cath and not the open heart. Not sure of what to think I asked the Dr. "Is that a gooood thing????" She enthusiastically said, "YES! That is a good thing!" Dr. del Nido feels like the cath will be able to do what is needed and we would be able to hold off on the next open heart until next year when she is bigger and stronger. Through this all we have learned that nothing is set in stone and changes happen based on how Natalie does each day and each visit the changes that they see. However, Brad and I were both relived to hear that this next trip will not be open heart. We are so happy for Natalie that she is doing well. They anticipate that we will be in Boston in early December, but we do not have a date yet. We also are not sure what procedure they will do during the cath. Our stay should be about a week unless things don't go as planned. So once we know more, we will share.
The first trip to Boston was great for many reasons. Natalie did great and is feeling better, Brad accepted an new job at MDU and will start October 1st and we got to visit and laugh with friends we had not seen in a long time and Natalie and dad bonded over many walks in the babybjorn. We hope that our next visit will be just as great as the first one.
Now we just continue to focus on Natalie getting stronger and try to relax and feel some sense of normalcy. Brad has been working hard to tile the bathroom floor and I have gone back to work. Oh, and the the Vikings are 2-1. Who would have thought:) Pharaoh and Ranger sleep as much as ever and are adjusting to life with Natalie. Pharaoh has pulled a few pranks, but is still a sweet puppy and Ranger lost ten pounds when we shaved him this summer. Life is good in the Henke home and I am so proud of my husband for reaching his goals and still having so much time to devote to Natalie and me. Thank you Brad!
Praise God for all the good things he has given us!
Please continue to pray for growth in the left ventricle and for chubby to get chubbier!!!
Thursday, September 27, 2012
Friday, September 7, 2012
Out of the hospital
Good morning,
Natalie got out of the hospital yesterday afternoon, and we're hanging out in a hotel for a couple of days. We go back over today to get a chest x-ray, but that's about it. They want us close for a day or two, and Heidi and I will monitor Natalie in case something would happen. Then, we'll be ND bound on Saturday morning. Natalie is doing extremely well. She's happy and active, and we're going to go see some of the sites in Boston today. A couple of Heidi's friends are coming down from Maine, and we'll get to spend some time with them today. Thank you again for all the prayers, we appreciate it very much.
Natalie got out of the hospital yesterday afternoon, and we're hanging out in a hotel for a couple of days. We go back over today to get a chest x-ray, but that's about it. They want us close for a day or two, and Heidi and I will monitor Natalie in case something would happen. Then, we'll be ND bound on Saturday morning. Natalie is doing extremely well. She's happy and active, and we're going to go see some of the sites in Boston today. A couple of Heidi's friends are coming down from Maine, and we'll get to spend some time with them today. Thank you again for all the prayers, we appreciate it very much.
Wednesday, September 5, 2012
On our way out of the ICU!!
Hi everyone,
They are going to be here in about 15 minutes to take Natalie from the CICU and move her to a recovery room. The breathing tube came out this morning, and she ate her first meal since the surgery. She is a little uncomfortable, but is doing well. Hopefully, they'll discharge her tomorrow and we can still fly home on Saturday.
They are going to be here in about 15 minutes to take Natalie from the CICU and move her to a recovery room. The breathing tube came out this morning, and she ate her first meal since the surgery. She is a little uncomfortable, but is doing well. Hopefully, they'll discharge her tomorrow and we can still fly home on Saturday.
Tuesday, September 4, 2012
Surgery is over
Hello everyone,
Natalie is out of surgery, and is in NICU. They're waiting for her to wake up so they can remove her breathing tube. She'll be in intensive care until morning, then they'll move her to recovery. Hopefully we're still looking at a discharge day of Thursday, and we're able to fly home on Saturday.
The surgery went as well as it could have gone, and they were able to do lot while they were in there. We'll monitor closely, and we'll know our next steps within a couple of months. We'll update again tomorrow sometime. Thanks for all the prayers.
Natalie is out of surgery, and is in NICU. They're waiting for her to wake up so they can remove her breathing tube. She'll be in intensive care until morning, then they'll move her to recovery. Hopefully we're still looking at a discharge day of Thursday, and we're able to fly home on Saturday.
The surgery went as well as it could have gone, and they were able to do lot while they were in there. We'll monitor closely, and we'll know our next steps within a couple of months. We'll update again tomorrow sometime. Thanks for all the prayers.
Catheterization Update
The docs just gave us the update for Natalie! Natalie is doing very well. They just placed the balloons in her pulmonary veins to increase blood flow. Wee assume this is done to help the heart get more blood and hopefully grow the left ventricle. They are going to start creating the hole between the left and right ventricles now. We are just waiting patiently in the waiting room that doesn't allow for food drink or cell phone use. GO ahead and insert the sarcasm in that last sentence. Those of you who know Brad and me know that patience is now our strongest life skill. Hope to see our baby soon! I want to hug her and give her snuggles.....
First Boston Update!!
Hi everyone,
Well, we got to Boston on Sunday, and Natalie was admitted yesterday. She was just taken into surgery at 10:00, and she was sedated. They did an echo, and that was completed a short time ago. She just went into surgery. Today, they will be performing surgery via a catheter inserted into the femoral artery. So, they will not be opening her chest up again, yet. They will attempt to make a hole in her left ventricle. The purpose of this is to force more blood flow into the ventricle, thereby hopefully causing the ventricle to grow to the point where it can be a functioning part of the heart in the long term. This way, she'll end up with a fully functioning, two ventricle heart.
We will not know if this was successful for several weeks or more. We will continue to monitor on a weekly basis in Bismarck, and the information will be relayed to Boston. There will be at least two more surgeries even in the best of scenarios, so there is still quite a journey ahead for Natalie. We will continue to pray, and we appreciate all of you who are doing the same.
I'm not as eloquent as Heidi, I'm a little more brief in my writing. So, there's the short, to the point synopsis so far. I'm sure Heidi will have a better, more creative post later today. Stay tuned, and again, thank you all for your thoughts and prayers. We truly appreciate all of you.
Well, we got to Boston on Sunday, and Natalie was admitted yesterday. She was just taken into surgery at 10:00, and she was sedated. They did an echo, and that was completed a short time ago. She just went into surgery. Today, they will be performing surgery via a catheter inserted into the femoral artery. So, they will not be opening her chest up again, yet. They will attempt to make a hole in her left ventricle. The purpose of this is to force more blood flow into the ventricle, thereby hopefully causing the ventricle to grow to the point where it can be a functioning part of the heart in the long term. This way, she'll end up with a fully functioning, two ventricle heart.
We will not know if this was successful for several weeks or more. We will continue to monitor on a weekly basis in Bismarck, and the information will be relayed to Boston. There will be at least two more surgeries even in the best of scenarios, so there is still quite a journey ahead for Natalie. We will continue to pray, and we appreciate all of you who are doing the same.
I'm not as eloquent as Heidi, I'm a little more brief in my writing. So, there's the short, to the point synopsis so far. I'm sure Heidi will have a better, more creative post later today. Stay tuned, and again, thank you all for your thoughts and prayers. We truly appreciate all of you.
Thursday, August 16, 2012
I've never been to Boston in the Fall!
Hello everyone,
I've always loved the Veggies Tales and one of my favorites has always been The Pirates that Don't Do Anything! I can't tell you how many times Brad and I have laughed about the video and joked about how we "have never been to Boston in the fall". UNTIL NOW!!!
After speaking with the doctors at the Boston Children's Hospital we have decided to take Natalie there to continue her journey. We look at her everyday and think, Wow! She is doing so well and looks so healthy, but we know that we are still just at the beginning of this long journey.
Our goal has always been to make decisions that will give Natalie a long and healthy life and with her anatomy being so close to normal we wanted to give her the best chance to have two ventricles. When we first sat down with Dr. St. Louis in Minneapolis that was our goal; two ventricles and avoid a possible heart transplant later in life. Some of the cardiologists felt like we should go with the single ventricle repair because they didn't feel that the left ventricle would grow. I think they felt is was pointless and it would prolong the inevitable. Some of them thought the hybrid would give her a chance. We didn't anticipate that that decision would lead us to where we are now. Had we not chosen to go with the hybrid we would never have had this chance to go to Boston.
Boston Children's Hospital has been following and reviewing Natalie's case since the beginning. They offered a series of surgeries that will give her a chance to have 2 ventricles and we will be starting that process soon. After our last check up here in Bismarck Natalie's ASD is getting smaller and closing. The ASD helps to keep the pressure down in her left ventricle. As it closes, which is a natural process for most babies, her pressure rises in her left ventricle. So we need to act soon.
The first step will be to create the septum (hole) in the floor of her left ventricle into her right one. She has some unique anatomy. The right ventricle grew a "tale" that wraps around under the left ventricle. (It's so strange to think about creating a hole instead of fixing one.) The doctors feel this will help to regulate the pressure in the left ventricle like the ASD was doing. Good news is that they think it can be done through her femoral artery in the cath lab instead of having to open her chest again. Hopefully all will go well and they can accomplish what they need to without another open heart surgery at this time. We are not sure when the next phase will happen. They say the best chance to recruit muscle tissue, like the heart, is when they are infants. I am sure the next step will be done as soon as they feel she is strong enough and ready for the next step, and if they see the results that they are hoping for.
With everything there is risk. The single ventricle route is risking to. Unfortunately, the next few years will involve a lot of risk and we pray that Natalie will do well. The doctors are very optimistic that this will be successful and give Natalie a heart that is as close to normal as possible with 2 ventricles. We pray that God will watch over Natalie and keep her as strong and healthy as she looks today. Everyday she makes me smile. I noticed today that my cheeks were hurting from smiling at her so much. I truly underestimated the love that I would have for her. I always knew I would have a strong bond with her, but I never imagined it would feel like this. I will have to upload some pictures so that you can all see how chubby her cheeks are now. She is so beautiful! We love her so much!
We pray for her left ventricle to grow and for guidance and wisdom to make the best decisions for Natalie. We pray to be able to hear God voice and remember the grace that he has shown to all of his children.
I've always loved the Veggies Tales and one of my favorites has always been The Pirates that Don't Do Anything! I can't tell you how many times Brad and I have laughed about the video and joked about how we "have never been to Boston in the fall". UNTIL NOW!!!
After speaking with the doctors at the Boston Children's Hospital we have decided to take Natalie there to continue her journey. We look at her everyday and think, Wow! She is doing so well and looks so healthy, but we know that we are still just at the beginning of this long journey.
Our goal has always been to make decisions that will give Natalie a long and healthy life and with her anatomy being so close to normal we wanted to give her the best chance to have two ventricles. When we first sat down with Dr. St. Louis in Minneapolis that was our goal; two ventricles and avoid a possible heart transplant later in life. Some of the cardiologists felt like we should go with the single ventricle repair because they didn't feel that the left ventricle would grow. I think they felt is was pointless and it would prolong the inevitable. Some of them thought the hybrid would give her a chance. We didn't anticipate that that decision would lead us to where we are now. Had we not chosen to go with the hybrid we would never have had this chance to go to Boston.
Boston Children's Hospital has been following and reviewing Natalie's case since the beginning. They offered a series of surgeries that will give her a chance to have 2 ventricles and we will be starting that process soon. After our last check up here in Bismarck Natalie's ASD is getting smaller and closing. The ASD helps to keep the pressure down in her left ventricle. As it closes, which is a natural process for most babies, her pressure rises in her left ventricle. So we need to act soon.
The first step will be to create the septum (hole) in the floor of her left ventricle into her right one. She has some unique anatomy. The right ventricle grew a "tale" that wraps around under the left ventricle. (It's so strange to think about creating a hole instead of fixing one.) The doctors feel this will help to regulate the pressure in the left ventricle like the ASD was doing. Good news is that they think it can be done through her femoral artery in the cath lab instead of having to open her chest again. Hopefully all will go well and they can accomplish what they need to without another open heart surgery at this time. We are not sure when the next phase will happen. They say the best chance to recruit muscle tissue, like the heart, is when they are infants. I am sure the next step will be done as soon as they feel she is strong enough and ready for the next step, and if they see the results that they are hoping for.
With everything there is risk. The single ventricle route is risking to. Unfortunately, the next few years will involve a lot of risk and we pray that Natalie will do well. The doctors are very optimistic that this will be successful and give Natalie a heart that is as close to normal as possible with 2 ventricles. We pray that God will watch over Natalie and keep her as strong and healthy as she looks today. Everyday she makes me smile. I noticed today that my cheeks were hurting from smiling at her so much. I truly underestimated the love that I would have for her. I always knew I would have a strong bond with her, but I never imagined it would feel like this. I will have to upload some pictures so that you can all see how chubby her cheeks are now. She is so beautiful! We love her so much!
We pray for her left ventricle to grow and for guidance and wisdom to make the best decisions for Natalie. We pray to be able to hear God voice and remember the grace that he has shown to all of his children.
Subscribe to:
Posts (Atom)